Reflections from the 2nd ICPPA — The Fight for Dignified NCD Care in Africa Continues
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| Group photo |
As has now become tradition, I’ve penned this brutally honest reflection not as a box-ticking exercise, but as a call to remember, act, and deliver. The stakes are high. People are watching. People are waiting.
A Voice From Within the System: No Longer an Afterthought
This year’s conference was unlike any other. For the second time, Voices for PEN-Plus were not just included—they were heard. Both Neema and I were embedded in the full agenda. Neema delivered a stirring solidarity message during the inaugural session, sharing her lived experience with searing honesty—what’s missing, what’s working, and what PEN-Plus means for real people navigating health systems in crisis. She echoed key recommendations in anticipation of the upcoming UN High-Level Meeting on NCDs and Mental Health, bringing urgency and humanity to every word.
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| Neema Mohamed, Voices for PEN-Plus |
I, on the other hand, spoke from the lens of a system recipient turned contributor, reflecting on the patient experience, structural gaps, and what it feels like when your voice influences change. I emphasized what it means to be designed out of policy conversations—until you're finally designed into the system. I reminded everyone that there should be nothing about us without us. That assumption-making in boardrooms leads to costly, dehumanizing systems. And that the future of PEN-Plus lies not in documents, but in people.
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| Tinotenda Dzikiti, Voices for PEN-Plus |
What We Heard, What We Know
Over three intense days, the sessions laid bare the triumphs and trials of implementing PEN-Plus across African countries. Let’s not sugarcoat this: the burden of severe NCDs like type 1 diabetes (T1D), sickle cell disease (SCD), rheumatic and congenital heart disease (RHD/CHD), and chronic kidney disease is brutal. These are diseases of children and young adults—often undiagnosed, misdiagnosed, and neglected in national health responses.
We heard of targeted case-finding innovations: simple algorithms for SCD screening in high-prevalence areas, routine blood glucose testing in paediatric wards, use of point-of-care echo to detect RHD, and newborn screening being integrated into immunization schedules. The Liberia experience showed how integrated approaches (community outreach, family-centred cascade screening, and EMR-based tracking) can strengthen early diagnosis even in rural areas.
We saw how Zambia’s model embraced community engagement, real-time telemedicine, and peer support to advance referral pathways—despite gaps in supply chains and human resource availability. And across all country presentations, one truth remained consistent: People are doing a lot with very little, but that isn't sustainable.
Mentorship, Medicines, and the Missing Pieces
It’s not enough to train health workers once and call it a day. As Sierra Leone and Malawi rightly pointed out, short-term training or e-learning alone is insufficient. What we need is ongoing, structured mentorship—and not the donor-dependent, sporadic kind. We must invest in mid-level clinicians, echo training, task-sharing, and continuous supervision to truly scale district-level capacity.
When it comes to diagnostics and medicines, the gaps are glaring. Too many clinics still lack HbA1c testing, point-of-care echo, or consistent supply of analogue insulin, hydroxyurea, or penicillin. The WHO PEN-Plus Operational Handbook will provide a strong framework, but implementation demands money, muscle, and metrics.
M&E That Matters, Financing That Follows Vision
Kenya's costed operational plan is an example of how we align PEN-Plus with UHC priorities, budgeting with intent. Uganda has integrated PEN-Plus indicators into its HMIS/DHIS2—a bold move for data visibility and real-time improvements. But across the board, digital infrastructure in rural settings remains weak, staff are stretched, and data quality often low. We cannot fix what we cannot see.
Financing? The elephant in the plenary. With less than 2% of domestic budgets allocated to NCDs in many African countries, and a decline in overseas development assistance, we’re operating in scarcity mode. But we heard game-changing proposals: health taxes, blended finance, impact bonds, diaspora funds, and regional procurement platforms. The projected $40 million annually needed for full PEN-Plus scale-up? Not impossible. But only if governments own the process and donors support sustainable mechanisms.
Centering the Human: Not Just Health Systems, but Healing Systems
The breakout sessions on community and patient-centered care were where hearts were cracked open. We were reminded that it’s not just about survival—it’s about dignity. Whether it was GPS-tracked home visits, monthly peer support groups, or diabetes camps led by those with lived experience, what rang true was that care must be human, contextual, and kind.
The language we use in clinics must change. Phrases like “non-adherent” must go. Healthcare providers must be trained not just in treatment but in compassionate communication, visual demonstrations, and culturally appropriate counseling. Knowledge heals—but only when shared with respect.
Strategic Roundtable: Where Our Voices Mattered Most
Towards the UNHLM 2025: Raising the African Voice
As we prepare for the UN High-Level Meeting on NCDs and Mental Health in 2025, we have a chance to mainstream PEN-Plus into the emerging African NCD agenda. That includes:
- Political prioritization of severe NCDs
- Integration of PEN and PEN-Plus into PHC and UHC
- Tackling commercial determinants head-on
- Demanding domestic and international financing
- Investing in data, research, and accountability
This isn’t charity. It’s justice. And it’s long overdue.
Conclusion:
For those of us living with severe NCDs, the 2nd ICPPA was more than a gathering—it was a call to action. It reminded us that our voices are central, not peripheral. But beyond the inspiration, there’s a brutal truth: we cannot build sustainable health systems on temporary aid. The recent USAID disruption showed us how fragile progress can be when it's donor-dependent. Philanthropy is not a permanent fix—it’s a spark. What we need now is full government ownership, integration of PEN-Plus into national budgets, and political will that matches the urgency of our lives. Countries doing better aren't relying solely on generosity; they’re backing their health systems with domestic resources and bold decisions.
To our healthcare providers, funders, and partners: this moment requires more than praise. It demands commitment to resilient systems—ones that outlast projects, transitions, and crises. Invest in people, not just programs. Prioritize mentorship, essential medicines, working supply chains, and frontline capacity. And to the public—this is personal. Severe NCDs touch every household eventually. The cost of inaction is too high. Let’s stop being surprised by disruptions and start being intentional about resilience. This is our chance to disrupt the old ways and build systems that serve with equity, dignity, and strength.
Final Words: Legendary Is the Bare Minimum
To the World Health Organization Africa Region, we are grateful for the invitation and for covering all the expenses—it’s never something we take for granted. Your continued support helps make meaningful participation possible. And to the NCDI Poverty Network leadership team, we say thank you—for the trust, the recommendation, and the belief that lived experience is not a side show, but central to everything we do. Representing the Voices for PEN-Plus, just the two of us, was no small task. But it was an honour. And it’s a reminder that when included, we don’t just speak—we shift systems.
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| Representing Voices for PEN-Plus |
As for me? My name is Tinotenda Dzikiti. I’ve sat in waiting rooms and war rooms. And I can tell you—when health systems are built with us in mind, we all win.
Let’s not build back better. Let’s build forward together. Boldly. Brutally. Beautifully.
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